A clinician discusses the differences between relapsing-remitting and progressive MS and the benefits of beginning MS treatment early.
Differences between Relapsing remitting MS and Progressive MS
relapsing remitting multiple sclerosis
Has the type of multiple sclerosis you have been diagnosed with changed over the years?
Types of multiple sclerosis
As you may know there are quite a few types of multiple sclerosis. Though if our previous polling is to be believed (and it concers with previous research I’ve conducted) around 60% of people with multiple sclerosis have been told they have relapsing remitting multiple sclerosis. Though a surprisingly high number do not know do not know into which group they fall. Around 7% in fact!
So why am I writing this blog?
Well one of the features of multiple sclerosis (which a number of our readers have mentioned here or on on MultipleSclerosisTalk) is that the type that a PwMS is diagnosed with can change overtime. Normally is is from relapsing remitting multiple sclerosis to another type , such as, progressive relapsing multiple sclerosis.
The aim of this blog is firstly to find out how common this occurrence is amongst our readers. So firstly we would ask you to take the poll below.
Secondly we were wondering if you could use the comments box below to share a few answers to the following questions:-
1) With which type of multiple sclerosis we you originally diagnosed? Which type did it change to?
2) How did you find out? Had you noticed any changed in your multiple sclerosis prior to this?
3) How has your MS treatment journey changed since the new diagnosis?
4) How did the change impact upon the life in general?
Please feel free to use the comments section below to share your answers or, indeed, add any part of your multiple sclerosis story you think will be of interest to our readers.
Many thanks in advance.
| LisaJordan1 | Diagnosed with RRMS in 1998. I have been very lucky and feel blessed that my relapses have not been more frequent and/or with residual symptoms. I have been on Betaseron since my diagnosis and steriods for my flare ups. I have been able to maintain my full time RN job thus far, don’t get me wrong there are days it is rough to do because of the fatigue or my leg is numb, but I want to continue working for as long as I can. I love my job. Realistically I know there will come a day that I will no longer be able to do my job any longer. MS will have progressed. |
| Maygrelle | Diagnosed with RRMS in 1989. Been in a wheelchair 3 times and told it was not likely I would walk again and each time I proved doctors wrong. Received a “final” diagnosis of SPMS in 2011 which I believe is accurate. I now walk with a walker or forearm crutches, no improvement since 2010. Very discouraged. I’ve been on Avonex, Rebif, Copaxone, and Tecfidera. Had two relapses this year (2015) since switching to Tecfidera. I have since stopped taking Tecfidera and hope to start Tysabri soon. Also considering high-dose Biotin. I currently require a PCA 6 days a week for personal care, cooking, cleaning, and laundry. I’ve had to drastically alter my life and hobbies. I’m not happy. |
| Tojo1969 | Originally diagnosed with RRMS in 1991, Diagnosed with SPMS in 2012. I am now confined to a wheelchair. Not much changed really; It certainly hasn’t slowed me down |
| StaciR | 1. RRMS -> SPMS 2. My legs were getting progressively weaker. No. 3. I was on Copaxone for a while, but I’m not on anything now. I’m in the midst of switching doctors, though, so we’ll see. 4. I accept help more readily. I don’t go out as much because it’s a hassle. I’ve asked for I’m looking for a house without steps. My MS is more visible to others, so I’ve had to answer more questions. |
| GrahamDaniells | Initially RRMS about 22 years ago, changed to SPMS 10 years ago. I was on DMD, Avonex then Copaxone with occasional oral or intravenous steroids. Since the SPMS my mobility has steadily declined and I now have to use a wheelchair for any hope of getting around outside. I have not worked since 2002 but not through choice. |
The University of Bath is looking for people with Progressive Multiple Sclerosis to take part in a survey. Can you help please?
University of Bath – Multiple Sclerosis
As I never tire of mentioning one of the purposes of this blog is to help promote academic surveys into various different medical conditions. I have a background in medical market research so I take a professional interest in the area.
In fact one of my key roles has been to develop research panels of people with multiple sclerosis. Interestingly (and importantly) almost all the research conducted was with people with Relapsing Remitting Multiple Sclerosis (RRMS). There seemed no interest in other kinds of MS such as Primary Progressive Multiple Sclerosis (PPMS) or Secondary Progressive Multiple Sclerosis (SPMS). If you are interested in the different types of multiple sclerosis and low the various populations fall out please have a look at some of our previous research here.
So I was delighted when Liz Sheils , a Post-Graduate researcher in psychology at the University of Bath, asked us to help with locating people who might help her with research with people with Progressive Multiple Sclerosis.
Sheils writes “The role of positive psychology in Progressive Multiple Sclerosis
You are being invited to take part in a research study to investigate the role of positive psychology in individuals with progressive multiple sclerosis. Please take time to read the following information and to consider whether you wish to take part. Contact details are provided below if you wish to discuss the research further.
What is the purpose of the study?
The aim of this study is to investigate the contribution of positive psychology (such as self-efficacy) to the explanation of anxiety and depression symptoms within progress multiple sclerosis.
Who can take part?
Participants who have been diagnosed with primary or secondary progressive multiple sclerosis.
What does the research involve?
You will be asked to complete a range of online questionnaires. They will take approximately 20-30 minutes to complete.
Do I have to take part?
You are not required to take part, participation is entirely up to you. You can withdraw from the research at any time without giving an explanation.
Will my answers be kept confidential?
All the information will be kept completely confidential and stored securely.
Results will be written up for the purpose of a dissertation and may be published, however no identifiable information will be available to see.
Contact for further information
Thank you for your time reading the research information sheet. If you have any questions or concerns please contact Liz Sheils, MSc Health Psychology Student, via email: es279@bath.ac.uk
If you would like to take part in the online survey please visit this website:
https://bathreg.onlinesurveys.ac.uk/multiple-sclerosis-positive-psychology”
Thanks very much in advance for your attention.
What sort of multiple sclerosis do you have? Part 2 Take our new poll.
Types of multiple sclerosis
A couple of years ago we ran a poll looking at the types of multiple sclerosis that our readers had been diagnosed with.
The original reason I was interested in the subject goes back to the days I worked in medical market research. We were always being told that between 80%-90% of people with MS had Relapsing-Remitting Multiple Sclerosis.
But according to the internal polling I conducted this figure is rubbish. RRMS comes in at around 60%-65% of the MS community. You can view the original research here.
But is this correct still? I thought I would re-run the poll and see what the current situation looks like. It would be great if you could take the poll below and share your diagnosis story in the comments section below. We would be very interested in hearing if you type of multiple sclerosis has changed since your original diagnosis.
Multiple Sclerosis Flare-Ups. What is a MS flare-up? What is your experience of a MS relapse? Please take part in our research and discussion blog!
Multiple Sclerosis Flare-Ups
I’ve been writing about and researching the stories of people with multiple sclerosis for nearly a decade. In that time I’ve learnt that one of the really big issues is a multiple sclerosis flare-up. Something which rightly concerns all of us in the MS community.
The aim of this blog is to allow our readers to share their experiences of an MS flare-up. In particular we are really interested in how you dealt with the flare and what you do to try and prevent another MS flare-up occurring.
Of course flare-ups are a particularly big issue for people with relapsing remitting multiple sclerosis (RRMS). Indeed the inclusion of relapsing in the name gives the game away somewhat! It can also be called an exacerbation (which is a bit of an understatement) or simply an attack.
A MS flare up is defined as the appearance of a new symptom or the re-appearance of older symptoms. This could involve an increase in fatigue, optic neuritis (https://patienttalk.org/?p=312), balancing problems or increased pain.
Timing is an important issue with a flare up. Technically the symptoms must last for longer than 24 hours and be thirty days after your last exacerbation. However sometimes the replace can last much longer – months in some cases.
It has been suggested that MS attacks can be triggered by infections or stress. However research is still on going in this area.
Treatments are typically steroid based attempting to lower the immune system to prevent it from attacking the body.
As we said at the start of the blog we are particularly interested in your experience of MS flare ups. It would be great if you could use the comments box below to share your experiences. You may well wish to think about the following questions when formulating your answers:-
a) Please can you describe your last replace?
b) How long did it last?
c) Do you know what triggered the exacerbation?
d) How did you treat it and how successful was that treatment?
e) How do you try and prevent a flare up occurring?
Obviously these are just guidelines so please feel free to add anything you think will be of interest to other readers.
Many thanks in advance.
| StevieJaye | a) Please can you describe your last replace? This week and it was a spasm in my thigh, which leads to my leg giving way b) How long did it last? A couple of days c) Do you know what triggered the exacerbation? I have a bad cold at the moment, so don’t know if this is the cause. d) How did you treat it and how successful was that treatment? Sometimes I take Diazepam and that works, massage, my normal meds. e) How do you try and prevent a flare up occurring? Sometimes there is nothing you can do to prevent it happening. |
| loreesaleman | Hang in their! 🙂 I have a feeling u will hang in there until your 80th birthday. I know there’s nothing funny about a ms but I had to giggle when you were explaining about the loosening up when you know you’re going down . It does work I tried explaining this to my hubby and he laughed.tuck and roll I call it. I know this well because my balance is so messed up. along with other things. I try to have some kind of sense of humor about it. sometimes its funny when people are watching me when im walking or I should say trying to walk and you’re like wobbling all over the place when my sense of humor has to kick in and I pretend that I’m drunk . I do take this disease seriously because it affects me and a lot more ways but you just can’t give up! oh how about like putting ice cream and cupboards and having it melt all over… aren’t going to introduce a family member that you known for a while and all of a sudden you forget their name! that’s a good one. People are staring at you! We’ll good luck to you I really mean it, and God bless |
| JenniferRogers1 | Singlemomof2 don’t give up! A lot of what you are saying sounds a lot like some of what I have and still go through. This is why our voices are soo important! This disease is like a thief in the night.. and it’s so hard to diagnose and treat that it’s almost like it doesn’t exist. Oh but it does…and the thousands of us who suffer from it know it does. If what one doctor says to you is no help, go to another one, and another until you find one that will listen to you and refer you to a GOOD Neurologist. The same applies to the neurologist. Keep looking. Never just accept what a doctor says simply because they are a doctor. It’s your body, your life. Take charge! And never give in! Hugs to you, stay strong! |
| Singlemomof2 | I was dx in July of this year. So far I have had problems getting a neurologist. The last one said that the lesions are normal and everyone has them. Then I had another doctor tell me the lesions were caused by migraines, I get sinus headaches, but they’re not that bad. Now I am waiting to get to a new neurologist. Since the new one is in the same office as one of my former doctors I have to get his permission to be seen, which is taking months I am about to go up there and not leave until he says that he okays it. Now everytime I have a relaps, which I am having one now, I have to go to the ER to get any help. They know it is a relaps and prescribe me steroids and gives me some while I am there, but they keep asking me why haven’t I seen a neurologist about this yet. I tell them the problem and they call my family doctor and tell him what is going on and he says he can’t do anything about it. It is so frustrating, I almost want to give up! |
| Langham27 | kathie1026 JamesRtidBlake Yes – I understand ‘random twitches – they are a constant companion as are fluttering eyelids |
| Langham27 | I was diagnosed with MS 43 years ago at the age of 30. Only in the last ten years have the symptoms increased. Fatigue is my greatest challenge. I am extremely heat sensitive – heat wipes me out. My right leg feels like a lump of lead and even my stimulator does not help. I cannot walk far, but put me on our tandem and away she goes – my husband is fatigued far more than me. The fatigue affects my comprehension and memory – on a good day I am as sharp as a fox, on a bad day mental battery FLAT. Never know what the next few hours/days will bring. Frustration leads to depression, so I tend to pace myself more these days. 73 next birthday. Next goal is to reach 80, still on my feet!! An effective treatment etc seems a long time coming, and many of us feel sometimes we are just left to “get on with it”
Had a diabolical period of severe face pain some ten years ago. Treatment with Carbomazapine and Ammitrytylene were brilliant and thank goodness it never came back. No other pain to complain of – just sometimes shooting pains when I flex my neck forward and severe cramps in right leg sometimes. Balance is worse when I am tired. Fell and broke one rib and badly bruised others a few weeks ago. On the mend now, but these tripping or falling episodes really knock ones confidence. Something MS does teach us…. when you lose your balance, don’t stiffen up, loosen up – the landing is then less painful and the damage is no so long lasting. |
| invictus582 | This article is informative but so frustrating to me. I was diagnosed in 2010 and had a bad flare up right afterwards and started Copaxone pretty soon after dx. After that my symptoms were managable but have gotten consistently worse. I don’t think there are any new symptoms (except possibly the noise sensitivity and dyslexia type things that have been happening) but the fatigue, focus, cognitive issues, optic neuritis, etc. have all been consistently worse and now to the point that I have to stop running my business to take medical leave so I can hopefully get things under control. When I visit the neuro (and a different neuro I had last year) they all say that it’s just ms symptoms and basically nothing can be done (although new neuro recently said to change meds to Tysabri), and even though symptoms are worse it’s not considered a relapse. This has been going on for over a year and it’s to a point now where I pretty much don’t even like leaving the house. Sorry – had to vent. I wish these Drs could get on the same page. I’m looking forward to taking medical leave so I can try and get this figured out myself, although that’s not the way I think it should be when the Drs are making so much money. |
| KimRobinson1 | Diagnosed 12/08. Last flare up was September 2012. Lasted about 6 weeks. I’m guessing too much “fun in the sun” is what caused this one. Called my neurologist and he set me up on 3 days of steroidal infusions. Cleared up my vision almost immediately:) However I had to use a walker for almost a month because I had weakness and pain in my legs. I felt so old having to use a walker at 31 years old. But its my life, and I’m too determined to be defeated:) |
| BincyPhilips | Hi I’ve been diagnosed in 2009…..to tell u the truth…I do not know the difference between a flare-up, relapse,and exacerbation…..can anyone tell me….now I think I’m having a flare…ataxic, numbness on both feet and hands….I’m on Rebif and gabapentin….also calcium,vit D3, B12 …. |
| Loriawilson | I got diagnosed in Dec 2012. I have been on Copaxone. I have only had one flare up since then. I felt like I was drunk. I was slurring words (not bad but it was noticable). It lasted 3 days before I called the dr. He put me back on steroids to help. Ive been on them for about 8 days and I feel better but still feel kinda “off”. This is my first flare up but I am going to look into changing my diet somewhat to see if that will help with future flareups. |
| kathie1026 | In reply to JamesRtidBlake.JamesRtidBlake When you say, “random twitches,” are you talking about the nerves jumping somewhere on your body (it feels like the nerves jumping when your lower eyelid sometimes quivers)? I can’t get anyone to understand what I’m saying when I talk about the “twitches.” Thanks for your reply. |
| JamesRtidBlake | My last flare-up was 2years ago and it came out of nowhere, couldn’t move my legs properly and i had my toddler son with me, scary. Before that, roughly about 4 and a half years ago, i experienced random twitches, fortunately recovered fully with steroid treatment. Unpredictability is the only word i associate my m.s |
| HazelHall | Im just getting over one and when it happened i just carried on my day with blurred vision and new symptoms such as bad spine pain and crazy little movements on my leg and side of face and i needed to urinate more often and was very tired. I was dx in feb last year and its been crazy spuradic relapes and flare ups. I have an infection in 2 teeth which triggered the flare up and my monthly cycle doesnt help. But i take primrose oil vit d fish oils vit e and make fresh mix greens and dark berry smoothys which help and cut down on my gluten. Im on gabapentin aswell as avonex. Im begining to feel better. |
| RachelLaurn | I was diagnosed in 1999 and since then, I have had at least 13 MS attacks.Each one was different and affected different parts of my body. One of the most severest was when my Peripheral Nervous System (PNS) shut down. PNS controls our involuntary movements.
My body temperature went haywire. One minute, I was so hot, I needed ice cubes to cool my skin. The next minute, I was so cold, my hands turned white and wearing gloves inside he house was not enough. I used a heating pad on top of my gloves. My heart was racing for 2 weeks. I had to take medication to slow my heart down so I didnt have a heart attack. I couldnt stop yawning until I would almost pass out. Digestion was nonfunctional so I could only eat one bite at a meal. My eyes would not work together. I had to cover one eye to see out of the other, without double vision. But the very worst part was that my equilibrium was NONFUNCTIONAL. I felt as though gravity didnt apply to me and that my body wasnt part of the earth. I cant explain the feeling, only that I was so confused and scared, I wanted to just die and cease to exist immediately because all time had stopped for me – I was in “limbo” trapped inside my body. I, therefore, could not go to the hospital, because my body was being ravaged in 10 different ways at once. A nurse came to my home for 3 days and gave me steroids. They did help tremendously but I was not symptom free for about 2 weeks. This attack will be scarred in my memory forever. It scares me to even talk about it. |
| geek1 | a) Please can you describe your last relapse? Ongoing. Right side (toes to shoulder) numb, pins & needles, tight, with some lose of strength. Clonus in foot. Unable to use right hand, which I cannot steer. It is also painful. Cannot touch nose with finger (eyes-shut test). Left hand and foot numb. Both thighs stiff. General temperature disturbance. b) How long did it last? Started 3 weeks ago c) Do you know what triggered the exacerbation? Poor diet? d) How did you treat it and how successful was that treatment? High dose IV steroids over 5 days. Unsuccessful e) How do you try to prevent a flare up occurring? |
| meekocat | a) Please can you describe your last replace? Not sure what you mean? My last relapse was February 20, 2013.
b) How long did it last? I am still having symptoms. Original symptoms were numbness and tingling in both feet with my right foot worse and severe spacisity in my right ankle. c) Do you know what triggered the exacerbation? I believe a fall down the stairs triggered the relapse. The only one I had prior to that was October 2011 when I couldn’t urinate, had to have a catheter put in, I also suffered from extreme fatigue (felt like I had Mono or something) and slept for almost 4 days straight. MRI and CT scan done on back to determine cause, none was found. They never asked or looked for MS. Looking back now I had a few episodes with getting up with numb feet and saddle area as well as tripping all the time and extreme fatigue. I just thought it was age-related. I am 54 now. d) How did you treat it and how successful was that treatment? I was just now DXD on Jan. 2, 2014 with RRMS. My neuro had me do a 5 day solu-medrol infusion. Still have numbness and tingling in my feet, but I am walking a little better. e) How do you try and prevent a flare up occurring? I’m supposed to be starting Copaxone injections, still waiting for approval from my insurance. |